Letters to My Mother, Part 5: What Are We to Do?
Thursday, January 29th, 2026: Letters to My Mother, Problems & Solutions, Society, Stories, Trouble.
Previous: I Tried to Help
Life and Death in Long-Term Care
Beliefs, Plans, and Denial
Our Family
Papaw, my dad’s father
Died quickly, in hospital
Of heart failure
Mamaw, his wife, widowed and living alone
Began hallucinating
Her son flew back and tricked her into a nursing home
Said they were going to the doctor
Aides grabbed her from the car
She died miserable, among strangers
My grandpa, your daddy
Died suddenly at home
Of a massive heart attack
Your mother, my grandma
Voluntarily entered a nursing home
Thrived there, singing, comforting
Cheering the other residents
My dad, your first husband
Found freelance home helpers by word of mouth
Paid them minimum wage
Lived at home, managing his own affairs
Until he died during a final trip to the ER
You never made plans for the end of your life
Refused to talk about it
Said you would never leave your home
Would rely on home help when the time came
I believed you irresponsible, living in denial
Until I realized that in the culture of our ancestors
Traditions in family and community
Provided for the end of life
Individuals were not forced to figure it out for themselves
My Friends
In our society, you were at one end of the spectrum
Some of my friends are at the other
Always worried about the future
They devote time and energy to planning for their end
One friend worries about dementia
Worked to create legal provisions for assisted suicide
If he begins to lose his mind
But as we found
Mental illness can defy science
Losing your mind
You could still think and remember
You were afraid to die
And you fought for your life, even while unconscious
What would the law say about that?
Is it really possible to plan for losing your mind?
Other friends prepare for the end of life
By buying long-term care insurance
Implicitly planning to spend their final days in facilities
Like the ones that failed us
Some voluntarily move into “retirement communities”
When they get tired of maintaining their homes
Long before they actually need home care
They like the idea of having care
Available onsite when they need it
With visions of daily golf or bridge
They don’t mind being sequestered among other old people
Isolated from community, families, and youth
Having spent two years
Seeking and working with the kind of care
Many people expect to be available
I believe we’re all in denial
With healthcare and elder care commodities
In our statist, capitalist, bureaucratic society
The kind of care many expect simply doesn’t exist
And often, we are forced into situations
We never could have planned for
Hospitalized with a sudden, unexpected crisis
Suddenly ending up in permanent long-term care
My End
As someone whose quality of life
Depends on hiking and making music, art, and stories
I want my life to end
When I can no longer do those things
I want my life to end
Before I become dependent on the care of others
The rural Irish lived in homes
That included apartments for their elders
When the elders were too old to tend the farm
They moved out of the main house
And became advisors to the young
Traditional societies around the world
Facing limited resources
Condoned suicide by elders
Who could no longer care for themselves
Stories of grandparents jumping or thrown off cliffs
Abandoned on ice floes
Trudging off alone in winter
In our colonial culture
Suicide is such a deep and strong taboo
Science is discouraged from studying these practices
And with our deep puritanical bias
We outlaw voluntary drug overdoses
When friends ask
I tell them when the time comes
I’ll just walk out into the wilderness
But what if it’s too late
And I can no longer get there on my own?
Healthcare Realities
Doctors and Hospitals
Your primary care doctor retired
Just before your final crisis began
Her office made no attempt
To find you a replacement
Our loved ones’ decline often begins in a crisis
Where they end up in the ER
The emergency department of a hospital
The goal of the ER is to rush a diagnosis,
Treatment, and discharge
Frequently, they’re wrong
A loved one must be onsite
To ensure you’re adequately examined
Safely discharged to a place with adequate care
Receiving timely follow-up with a physician
If a patient is in danger of dying
Staff will ask
Do you want us to save you?
This is called Full Code
Involving CPR, intubation, defibrillation
Breaking ribs, puncturing lungs
Risking severe disabilities
If the patient is hard of hearing or confused
By strangers and an unfamiliar environment
They will typically agree
This decision is impossible for family to change
Doctors agree it’s wrong, but that’s the system
If the patient is unable to make a decision
The nurse on hand calls and wakes up next of kin
In the middle of the night, demanding an immediate decision
When your condition is critical
But you need more than a few hours
Of testing and treatment
They admit you to Med Surg
It’s a catch-all unit
Where your case is supervised by a hospitalist
Coordinating a team of specialists
But not all hospitals have all the relevant specialties
And in our colonial society’s reductive paradigm
Specialists have no interest in
Or knowledge of other specialties
They regularly claim authority
And make false conclusions, even let patients die
Based on ignorance
And a narrow perspective
If the issue is behavioral or mental
A hospital psychiatric unit should be the last resort
These units are designed like prisons
To restrain and prevent violent behavior
Because you had no PCP during your crisis
When you were discharged from hospital
There was no follow-up
No confirmation that diagnosis was correct
No confirmation that treatment was successful
Money and Care
Some people will assume that our problems
Resulted from limited and substandard healthcare
In our hometowns
The capital of a notorious red state, and a remote rural town
Many people assume the best healthcare can be found
In affluent enclaves in New York, Boston, the Bay Area, Los Angeles
Minneapolis or Phoenix, with their Mayo Clinics
But the real picture is much more complicated
Yes, I had to fly to Seattle for specialized hip surgery
And to San Francisco for nonsurgical foot treatment
I could afford that, even in my low-income bracket
So there was no need to live in those places
Critical patients in small towns are always referred to cities
For specialist treatment not available locally
But you had an excellent heart surgeon in your Midwestern city
And our small-town psychiatrist was likewise exceptional
Home Care Realities
With few exceptions, our homes and our parents’ homes
Are not designed to be accessible
And most could not be adapted for parents with mobility issues
Parents who need outside caregivers
Requiring their own space and facilities in the home
Our ancestors cared for their parents at home
The architecture and skills handed down by tradition
I yearned to restore that tradition
But dreaded the need when I saw it coming
Our society fails to train us to be caregivers
Like everything else, caregiving is commodified
With low pay, high burnout and turnover
Home care agencies abound in every community
But unless you can prove low income and assets
Qualifying for Medicaid
Private pay is your only option
$30-40 per hour
My dad found freelance home help by word of mouth
Most of them were adequate
For you and your disabled son, I hired an agency
Most caregivers, supposedly trained
Were hopeless and had to be replaced
Nearing the end, when you needed 24/7 monitoring
An agency promised that home care was an option
We agreed on 8 hours per day
With me taking care of you during the remaining 16 hours
But at the last minute
Discovered caregivers are unavailable overnight
On weekends or holidays
So when could I sleep, or take a break?
Forget about overnight trips or vacations
Care Home Realities
Types and Differences
Depending on our degree of independence and need for care
Our colonial, statist, capitalist, bureaucratic society
Offers a spectrum of facilities
As service commodities we can purchase or qualify for
Depending on our financial status
These facilities are most often designed
To offer a continuum of care
In which we can progress from more independence
To more care, as we decline
And most are owned or franchised
By national or regional corporations
Those who actually prefer to age among their peers
Sequestered from the rest of society
Can move to a facility with private homes, duplexes
Or apartments where “seniors” can live
As independently as they please
These are called retirement communities,
Senior living, independent living, etc.
Both my parents experienced health crises
After which they were discharged to a short-term rehab facility
Intended to prepare them to return home
Rehab is basically a skilled nursing facility
A short-term nursing home, part of the continuum of care
So that when a patient fails rehab, they can move directly
Into long-term care
And short-term rehab is covered by Medicare
Assisted living refers to an apartment complex
Where residents can live independently
With onsite access to as much care as they may need
Assisted living facilities may stand alone
Or may be part of a continuum of care
For qualified low-income residents,
Room and board are covered by Medicaid
In the facilities I reviewed
Private pay can range from $3,000 to $9,000 per month
Large corporate facilities at the low end
Small privately-owned facilities at the high end
Memory care refers to long-term residential care
Primarily for those diagnosed with dementia
But as your case showed, they may accept
Anyone struggling with behavioral issues
These are secure units
Typically requiring a keypad code for entry
They may be designed more as homes
Or more as skilled nursing facilities
In any case, memory care facilities may stand alone
Or may be a unit within a larger continuing care facility
Again, Medicaid pays for room and board
And private pay ranges from $10,000 monthly
Those who need help with medications
And activities of daily life (ADLs) in general
Such as dressing, toileting, hygiene, and feeding
Typically end up in long-term care
A skilled nursing facility
Traditionally known as a nursing home
With rooms like in a hospital
Shared or private
For those unqualified for Medicaid
Private pay ranges from $10,000 per month
The larger urban facilities we encountered
Encompassed all types in one building:
Short-term rehab, assisted living apartments,
Memory care and long-term skilled nursing units
Finding a Facility
Image Versus Reality
National magazines with retired subscribers
Have always been full of ads
For supposedly elite elder care facilities
Mostly in the East
My Stanford alumni magazine has glossy full-page ads
For “senior living communities” in affluent enclaves
Like Carmel Valley
But the places with big advertising budgets
Are the places that are not good enough
To survive on word-of-mouth
That’s the way advertising works
And even if we got our parents into one of those places
We wouldn’t be able to visit them regularly
Some believe that more money
Will get you better care
That’s how we’re indoctrinated
In a capitalist economy
But that’s not what I found
The best places I found are the smallest and hardest to get into
They may or may not be the most expensive
But because they’re small
The elite homes
Soon become confining, claustrophic
I suspect the really rich
Are able to offer incentives and accommodations
For paid, live-in caregivers at home
I’ve driven past, and been referred to
Huge facilities with hundreds of apartments or rooms
Landscaped grounds, vegetable gardens
Bistros, pools, theaters
I would never place a loved one there
The best places I found in Indianapolis and Tucson
Were private homes staffed by the owners
And small, locally-owned facilities
Designed around family-centric models
But all those had waiting lists
And because you weren’t able to plan ahead
Our needs were urgent
We had to settle for places with immediate openings
Our Experience
In your metro area of Indianapolis
With a population of nearly a million
An online search returns about 20 elder care homes
The search for Carmel, the affluent northern suburb
Returns an additional 15
There will be lower numbers for suburbs
To east, west, and south
Hence, for a big city
Dozens of options within weekly driving distance
But due to uneven property values
Typically located far from our homes and workplaces
Most of these follow the “continuing care” model
With units for rehab, assisted living, memory care
And long-term skilled nursing
Like most – maybe all large cities
Indianapolis has placement agents for elder care
An agency I worked with has “scouts” for each part of the city
But they only provide placement at large corporate chains
Tucson, with the same population as Indianapolis
Has an agent that will identify and show you
Options to meet your specific needs
At a broad range of facilities
From corporate chains to private homes
Overwhelmed by choices
And the unreliability of online ratings
I followed personal recommendations
From people I trusted
But was disappointed anyway
Life and Death in Long-Term Care
Management
All the management I dealt with
At every facility
Showed two faces
Friendly and caring at first
Then, if family takes a close interest in their loved one’s care
Management reacts to suggestions defensively
Reacts to issues offensively
Blames resident or family
Before considering their own responsibility
They all exhibited a top-down culture
In which management behavior
Was imitated by staff
Dishonesty, manipulation, and retaliation were common
Management always spoke with authority
Of residents’ conditions and mood
When they never spent time alone with residents
Never engaged residents in substantive conversations
They get away with all this
Because it’s a seller’s market
They have waiting lists
Can reject you and move on
Family Relations
Again and again, I’ve heard from friends
About what a wonderful home they found
For their parent
And over and over, in care facilities
I’ve met residents who are lonely and bitter
Because their loved ones abandoned them there
And seldom if ever visit
I did meet a few – less than ten percent
Who say they’re content
In my grandparents’ generation
If elders went into a care facility
Their children and grandchildren
Lived only a few blocks away
Visited after work or school
In our highly mobile society
Where families are dispersed across continents
Sometimes across oceans
Children are used to going months
Without seeing their parents
Most care facilities are designed to replace the family
Encourage residents to trust staff
Attempt to foster community among residents
Why do families accept that?
Because most families have no room for elders
They have careers, children of their own
Or want to enjoy their retirement
Visit their loved ones only at their convenience
In our blind worship of progress
We’ve abandoned native traditions
Elders no longer accumulate stories and wisdom
That could help us and keep them engaged
Different facilities have different policies
Some allow visits 24/7
Some provide meals for visitors
A few may even have overnight accommodations
Many facilities, designed for staff convenience
Create barriers against both visits and outings
Long walks from parking
Long interior hallways
A series of locked doors or gates
Some requiring staff to open
Others, like your final home
Only allow visits during limited hours
Don’t allow family to share meals
Conditions
Facilities are typically designed and managed
For staff convenience first
Resident comfort second
At the time in your life
When you’re least resilient, least adaptable
These facilities force you into a schedule
For their own convenience
Confusing you, making you feel helpless
The hearts of these facilities are the nurse’s stations
And the dining rooms
Once you’re identified as a fall risk
Fearing liability, institutions will confine you to bed
Limit your mobility to a wheelchair
May even confine you to the nurse’s station
Sleeping all day, slumped in your wheelchair
The hearing impaired
Can’t communicate adequately with staff
So their health conditions
Are never fully known or treated
And they’re frustrated in group activities and events
Many facilities advertise chef-cooked meals
Made from healthy, fresh, even local ingredients
But even at the highest-rated facilities
This is often merely marketing hype
The only way to tell is to visit at mealtime
Day in and day out
Who can do that?
Even the best facilities lack the ability
To offer personalized food
On a personalized schedule
Dysphagia (difficulty swallowing)
And aspiration (accidentally inhaling while drinking or eating)
Are common among elders
We can easily train ourselves
To eat and drink safely
But with the liability of choking
Institutions force residents onto a pureed diet
Where, unable to recognize their food
They lose weight and weaken
You literally starved to death
Because your home could not give you
What you liked, when you needed it
Many homes have no way
For residents to call for help
Even with call buttons
With 8-12 residents per aide
It can take up to 45 minutes
For a resident to get help
Lying in a soiled bed
If you yell, staff get angry
Or make fun of you
Good staff are hard to find
With high burnout and turnover
Some are good at what they do, and care
Many of them are studying, for higher pay
And will move on soon
Most are just burnt out, collecting a paycheck
What they call activities and entertainment
Are designed for the lowest common denominator
Bingo, juvenile cliches, celebrities
Insecure, embarrassing volunteers
I always found wonderful people
Both staff and volunteers
Who deserve endless praise for showing up
Giving their heart, soul, and time
But they were in the minority
Hospice
When you are admitted to hospice
You fall under the care of a doctor you will never see
Their primary function to prescribe medications
At the request of a nurse
Who visits you weekly
Under Medicare rules
You’re ineligible for most therapies, treatments
Or visits to doctors
You can still get them on a private pay basis
For us, the result was that I became your doctor
I saw you the most, spent the most time with you
Since I was the only one you trusted
I had the most accurate experience of your symptoms
I studied and requested your medications
If I hadn’t been available
Symptoms would’ve been missed
Your care would’ve suffered
Our big-city hospice provider was wonderful
Professional help available 24/7
On call nurse within 30 minutes
Social worker helped find resources, completed paperwork
Small-town hospice had limited staff
Completely lacking some functions
No help in a crisis
Their social worker a disaster
We loved your hospice nurses
And some of your hospice aides
Who came to bathe you two or three times a week
Provide personal care as needed
Hospice promises to provide comfort at the end of life
I discovered that was a lie
Not even morphine could relieve your suffering
In the final days
Closing the Cycle
The colonial tradition brought by our English founders
And still observed in conservative families
Is to preserve the body by chemical embalming
Hold an open casket funeral for viewing by the community
Followed by underground burial officiated by a pastor
With the goal of protecting the physical body
From returning to its natural elements
Indigenous societies worldwide
Implemented a variety of practices
Ranging from burial to abandonment and cremation
Our bodies came from the earth
Evolving and rebuilding constantly
From the resources we ingest
Ultimately originating in nature
Clouds, rocks, rivers, soils, plants, animals
Burial and cremation, while practical in some habitats
Deny nature the resources she gifted us
This is recognized today in colonial society
By a tiny minority in the natural burial movement
You asked for cremation
I planned to honor your wishes
But when the time came I was unprepared
Had no idea what would happen
I had to choose a funeral home
The funeral director came, I had to leave
They took your body away
Put you in cold storage, as found
I had to get permission from the state
To have you cremated
I waited all week
Wanting to be with you
I vaguely knew that in our ancestral tradition
Family and others from the church
Washed, dressed, and casketed the body for burial
I had no idea what would happen to your body
Wanted to be a part of that
But had never been trained
It turned out that you would just be conveyed from storage
Into the chamber, for incineration
By strangers
Burning and cooling would take hours
I thought of waiting outside
But it’s a big building
There would be nothing to see
In the end, I received your ashes
In a plastic bag
Inside a plastic box
Human Nature
An institution is only as good as its people
What happens to the people
When society itself is dysfunctional
And its institutions are failing?
The villains of your story
The corrupt police and prosecutor
Your troubled second husband and his insecure daughter
The arrogant, ignorant doctors and facility managers
The cruel and thoughtless aides
They all hurt us
In some cases terribly
In some cases repeatedly, over time
But we understood them, you and I
None of them is all bad
Like you said, most of them were two-faced
Sometimes kind, sometimes cruel
Insecure, damaged people
Taking out their own fears on the weak, the helpless
Their jobs some of the most difficult
Shouldn’t be jobs in the first place
Should be traditional roles in a healthy community
Not careers in an economy
What Are We to Do?
Our statist, capitalist model
For elder care as a commodity
The result of what we believe
To be generations of “progress”
Works no better than our other institutions
The only healthy way to care for elders
Is within healthy families
Within healthy communities
Which our society fails to create or cultivate
Which our “progress” actively destroys
Via technologies of mobility and long-distance communication
What we are left with is institutional care
Subsidized by the state at generally low standards
Or purchased by us at from $36,000 to $144,000 per year
Depending on the level of care we need
A decade ago
I fought your husband’s estate
For a settlement that would keep you secure
But there was no way I could predict
Your ultimate needs
During your last year
When you were nearing the highest level of care
Not knowing how long you would last
I worried about running out of money
I assumed that if you had a prognosis of a few weeks
And if I could find home help
We could afford to keep you at home
But in the end, home help was only available
During regular business hours
Leaving me on duty overnight and all weekend
I assumed that if you had a prognosis of a few years
We could afford to keep you in a care facility
But science can’t provide a prognosis that accurate
I believe that as families
The closest we can come
To a healthy traditional model for aging and dying
Is to provide lodgings for our elders in our homes
And when they need care, to enlist family
And community, providing care in the home
But since technology disperses our families
And capitalism leaves us burnt out
And isolated, on a fixed income
When our elders need care
This model is only available
To the very wealthy
Based on our experience
The second best model is emerging
In large metro areas
Families who convert their homes
Into private elder care facilities
With typically 4 to 6 bedrooms
These facilities are in great demand
And typically have long waiting lists
Sometimes years
Hence they’re not options we can rely on
Because who can plan
When their elders will need help?
For those of you who worry about the future
What’s your plan for civil war?
What’s your plan for economic collapse?
Science could not explain or treat your suffering
Drugs could not relieve it
Care homes could not provide loving care
Hospice could not comfort you at the end
Society does not allow our bodies to return to nature
What are we do to?